Dreams and Hopes...are they closer than they appear??

So I had my disability hearing yesterday.  I am on my 5th step I believe---I lost track.  Denied all other times by review of my records.  This time I got to talk and tell my story.  Basically they ask what do you do on a normal day.  What your symptoms are, how long have you had them, what about housework, who does shopping, do you drive?  If you do how often?  Then a vocational expert states well this person could work a sedentary job 1-2 step task --know what that is?  Yea, neither do I--my representative grilled her on that one as to what jobs in this area would be appropriate for me to be able to do and basically like putting a pen cap on the top of a pen--and how many jobs are there like that in this area?  um.. none.   And according to my testimony what kind of job would I be able to do?   Um---None.  
So it all depends on the judge now and if he believes what I told him and how I feel and what my symptoms are.  I get flustered in front of people trying to talk and so sometimes things don't come out right, but the representative said I did good... so we have to wait.. 2 weeks or 2 months.. or maybe more.  If they deny that, well then we may have to start all over... we'll see.  

It's frustrating--I hate hurting all the time.  People say do this, or do that, or if you would exercise more..It's like this----

 

It's difficult to find motivation to do things when you deal with the cycle going around and around.  I try not to complain a lot---I don't want people thinking that is all I do and then don't want to be around me--but it really sucks to be in pain 24/7.  Have you ever had a really bad back ache?  Or a migraine?  Or even a toothache... think of having that every day of your life, all the time, no matter what you do...  

I don't want to be grumpy, or turn down offers to go places or be around people, but sometimes I just can't do it... 

Yep, all of the above (of the 7 dwarves) ---so honestly, I'm not trying to be antisocial, or if I get up and stand instead of sitting with the rest, it's not because I don't want to be around you--it's because I can't stand to sit anymore.  It's hard to explain invisible illnesses to people---of course it isn't something you can see.  No one can tell you are in pain, there isn't some sort of test to show that yes, man, that hurts!  And there are other symptoms too--fibro fog---sometimes I can't find my words, sometimes I can't think straight, sometimes I even forget how to get home when I'm driving which yes, is pretty darn scary.  

I've been to doctor after doctor, meds after meds, tried different things as far as aquatic therapy and regular physical therapy... I wish there was a magic button...

There is no way around it. So I know people are going to judge me on trying to get disability.  I'm only 42 years old and I feel like a failure---I am a registered nurse by profession.  I worked in the ER, CCU, home health and long term care for mentally retarded--as well as a school  nurse.  It's not easy profession, but the reward you get when you know you have helped someone is amazing... and I miss it believe it or not.  I can't do that job anymore---I can't think of any job I could do and do safely and effectively.  I never imagined all those years when I was helping others that I would be the one who needed help even before I turned 40.....and I wish I could find someone who cared for their patients like I cared for mine... hard to do though... some don't even believe it's a real thing--all in your head... ugh.  

So anyway, the disability hearing is over and done---and I'm going to Pennsylvania with my daughter to spend some time with family and see my new 'granddaughter' and other grandkids and daughter (foster daughter, but that's too many words to explain when you love someone).  Away from all this madness down here for a while and I hope it helps me to relax... and yet, I still have not packed... I sit here listening to the thunderstorm and looking out the window at the lightening....
I did get the doctor to fill out a form today to put us on the list for a one story home here on Fort Story--it will make things so much easier for me in dealing with day to day tasks that normally now I come down in the morning and I go back up in the early evening to lay down and that's that... there will be more room and plus we won't have any crazy neighbors attached to us that I will have to deal with...   
So I dream... and I hope... and pray that some day I can finally have one day.. one moment without pain...

So for now that's it....not too much writing but I am in a hurry and want to get at least some clothes packed tonight... 
So if you're up in PA---look me up!!!  Would really like to see some old friends while I'm there.